because life didn't give me a manual when it gave my mom ms

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I had trouble sleeping last night. I was lying in bed and commanding myself to go to sleep. Go to sleep. Go to sleep. Instead my mind swirled with worry. Swirled with uneasiness about the future. Swirled with imagined “what if” scenarios. None of the “what ifs” were ever good…all bad. All stressful. I felt a lot of anxiety. Then I did fall asleep and would wake up and something would trigger another anxious thought again. I still don’t know why last night caused this or what the root of the issue was…Was it just an isolated sleepless night of worrying or did it mean more than that?

But in the midst of it all I was trying to just lay there and calm myself into a relaxed state instead of the wide awake and stressful state my body felt like. I laid on my back, I put my hands on my stomach and pretended one of my hands was someone else as they held each other, and I envisioned Mom. I envisioned her saying “everything will be okay; everything will be okay.” As I did this, I seemed to move into a more relaxed state. Eventually my mind stopped racing and I drifted off to sleep.
It was a frustrating night to say the least…especially being a Sunday night. I am a little tired today but not as tired as I should be based on the low amounts of sleep I got last night. But the thing I found most interesting in all of it was that at 28, the thought of Mom, my Mom, being there with me calmed me down…in the same way it would have if I was a little kid. And in those moments when I was thinking of Mom, I wasn’t thinking of Mom who has MS, I was just thinking of Mom. This was something MS couldn’t impact because it can’t. It can’t impact the feeling I get from the comfort of feeling or envisioning the presence of my Mom.

Do you ever have trouble sleeping because your mind won’t stop racing? Does it ever happen to you more on a Sunday night with a looming new week ahead? What calms you down or relaxes you? How was your weekend?

I have a little bit of a routine when it comes to calling Mom. I do it everyday at lunch as I have pointed out and talked about before. Today I called her while I was walking to run an errand. She didn’t answer the first time I tried so I figured she was just a little farther from the phone. So then I tried Dad’s phone and he didn’t answer. I’ve been trying to call Dad periodically just to check on him and see how things are going.

Mom called back and we chatted for a little bit but then I needed to get off the phone. When I got done, I noticed I had a missed call from Dad, so I called him back. We talked while I walked back to work. I have to take advantage of this time because typically he is around Mom and isn’t free to discuss everything. I never called Mom back. I told her I was going to, but I didn’t. I had just a few minutes and was debating if I should call Mom quickly but then I had this awful thought- Mom is probably not even going to remember I told her I’d call her back…or if we get on the phone we aren’t going to have anything left to talk about…so I didn’t call her back. I didn’t think much of this. Normally I might have but today I just didn’t.

Fast forward to 3:00 today, my phone rings and it’s Mom. She said “I thought you were going to call me back? I wanted to hear about your trip and the wedding this weekend.” She didn’t sound upset but just friendly and cheery. I was able to talk to her a little bit at my desk but then I had to get back to work. I also immediately felt bad because in my eyes she was having a good day/a good moment and I missed it.

It’s tough. I feel bad because I usually do have those thoughts but I ignore them. I push them away and do what I know is right. Today though I listened to those thoughts and in listening to those thoughts I pushed aside Mom. Pushed her aside like she didn’t matter and she does. I also don’t think I realize how important our daily chats are to her. Sister K has told me this as well. She said you don’t know how much Mom looks forward to those conversations. Today I ignored that thought as well. I feel like I was a little selfish and that’s not how I want to act. I don’t want Mom’s MS to interfere with my relationship with Mom and today I let it win. Lesson learned. I now know what it feels like to let those thoughts win and I don’t like it. I’ll do better next time.

*I guess I felt I needed to come here and be honest- and confess these thoughts to someone. Thanks for being that someone.*

Have you ever had moments where you don’t realize the importance of your actions? Have you ever felt bad for something as simple as not making a phone call? Do you like to talk on the phone while you walk around?

Do you ever ride elevators? I do…everyday. It’s how I get in and out of my office. I have often thought of them as the connection between two worlds. I board the elevator en route to my “working self.” In the evening I board the elevator en route to my “real self.” But while I am in the elevator it’s just quiet and mindless time with myself as I transition and switch gears. This morning I really felt that transition, and in a way, I didn’t want it to end.

I called Dad’s cell phone this morning while I was driving to work just to see how everything was going. It was off so for the next 5 minutes I debated calling home- Dad was either still home getting ready for work or he was at work and in a meeting. So I called….it rang about 6 times, I nearly hung up figuring Mom was there but sleeping and then Dad answered. Dad got on the phone and said he was just sitting at the kitchen table praying for help with everything and I called…it was strange.

On Monday Mom’s doctor switched her spasm medication to Baclofen. Beginning yesterday, Mom and Dad started seeing real improvements with Mom’s walking and her muscle ability. Then last night Mom was sick and my parents had a tough night. Dad doesn’t think Mom ate enough yesterday and that mixed with an active day seems to make Mom’s systems go very out of whack. But regardless, it was a very tough night. I have had those nights before with Mom and they can be exhausting in ways you don’t even realize. To put a complicated experience simply, they are draining.

Dad knows he has some tough decisions to make regarding Mom. He has found a counselor and is going to approach the topic with Mom. Regardless of Mom’s decision, Dad said he needs to see someone. The person he found deals primarily with people diagnosed with diseases like MS and he comes to your house. We’ll see how it goes, but I don’t predict Mom will take this well. I am realizing though that Mom’s MS is impacting each of us differently. Dad, Sister K and I are each impacted by this and the two people whose experiences are the most similar are Sister K and me. While we can relate to Dad, we also cannot because this is his wife he is going through this with, not his Mom. Even though we are all in the same family, the relationship is different. The stress involved is different and the emotions are different.

I talked to Dad pretty much until I got to work and then I stood outside my building talking to him a little longer. I then walked inside and got into the elevator. I stood there with my head leaned back against the wall and just let my mind go numb. I told myself that when those doors opened the thoughts associated with Mom’s MS needed to move to the back of my mind and the positive, friendly and happy employee that I am needed to move to the front. When I leave work today I will shift my mind again. But this morning I was thankful for my quiet and alone time in the elevator. I was able to give myself a pep talk and give my mind a rest behind the doors of the elevator. It gave me a space to be completely alone as I moved both physically and mentally between places.

Do you ride elevators often? Have you ever seen an elevator as a transition place between two different places? Do you get a secret joy when the elevator goes the entire distance you need without stopping? Now for the fun one, have you ever gotten stuck in an elevator?? (I have…) Hope you have a great weekend!

I am working through a lot of feelings in my mind over the past 24 hours. I am trying to find a way to somehow get a grip on the changes going on with Mom. As I sat in Mom’s doctor’s office yesterday while she was getting upset at Dad and me I had this realization- this is not Mom speaking, this is MS speaking. It reminded me of what I used to say to my Grandpa when my Grandmother who had Alzheimer’s would be so mean to him- it’s not her, it’s the Alzheimer’s.

It is incredibly difficult for me to on one side be so angry at Mom but then on the other side I am laughing and talking about meaningless stuff. I can’t hate her. She is my Mom. I am not going to cut her out of my life. She is my Mom. I’m not going to stop speaking to her. She is my Mom. But in the same breath, as I sat there yesterday and watched her I couldn’t help but think, this isn’t my Mom.

In a perfect world I wouldn’t have to split these two identities up. In a perfect world Mom would cope with the fact that she has MS and start to accept it and deal with it instead of lashing out with such anger and borderline depression. But I don’t live in that perfect world. In my world I have a Mom who sometimes is the most wonderful Mom in the world and is the woman who is one of my best friends and confidante. Then it flips and I have a Mom who is angry, depressed, hurting, upset and creates a person who I don’t recognize. A person who I struggle to understand and a person who makes me angry in return.

I am not sure if it is the right frame of mind to take or not, but for the next few days I am going to try it out. Try to rationalize my two Moms to see if it can help me get a grip on the mix of emotions I am currently feeling.

**I can’t thank you enough for the support I received from such wonderful readers yesterday. Your comments, feedback and support meant the world to me. I pour my heart out on this blog and I never know how it will be received or how it will be taken by others. I am finding that I have made my own friends here in this virtual world as I navigate this sticky part of my life. You come here to listen to me share and not to judge. It means so much. I wanted to say thank you for being part of my journey in dealing with my Mom’s MS.**

Have you ever seen two distinct and conflicting personalities in someone you love because of a disease? Do you think this is a good or bad approach to try to take?

Last night I flew home from a weekend of visiting my college best friends. I could have driven but got a good deal on a flight and since I am trying to preserve my car until Husband is done with school I thought why not save the miles and fly.

I was laughing about the irony of this decision last night as a huge rainstorm landed smack on top of the airport I was flying into causing us to have to circle the area in the air until we could land. After 30 minutes of circling and knowing Sister K was waiting in the cell phone lot for me worried, we landed safely and I was happy to be back on the ground.

I knew one way or another we would land, it was either going to be in my city or a city nearby. I was praying it would be my city becuase if it was another city I was just imagining the mess I was going to be in trying to make it back. Renting a car/continuing on the plane, how would that work. But when this is happening in a plane you don’t have any choice. You literally have to just “go with the flow.” That is what traveling amounts to most of the time, especially air travel. You have to “go with the flow” because you literally have no control. The pilot is in control and you are in the passenger seat. If you think about it the only thing you have control over is what kind of drink you would like and turning off your electronic devices.

I am feeling like that in life right now. In a way with Mom’s MS I am not in control. She isn’t either, but she has a little more control over how she handles it than I do. But the tricky part is at what point do I have to acknowledge that she may not be utilizing her control in the best manner? At what point do we begin taking part of the control? Realizing allowing her full control is not benefitting her anymore. I know those are dark sentences. Maybe even a bit unspoken territory. But it is there I struggle. There I begin to feel like a bad daughter. Most daughters deal with this battle when their parents are more elderly, their cognitive state more deteriorated, a point when it is more acceptable to take this control. I am a lot younger and so is Mom, yet at the same time Sister K and I feel like we are hitting a wall and needing to take some control. But we struggle because this is also our Mom. I want to respect her but at a certain point I am beginning to think you have to invoke “tough love.”

It’s messy. I am trying to figure that out right now. Talking to Dad about it quite a bit right now. Talking about how to handle certain issues also feels as though we are infringing upon my parents’ marriage. Their way of doing things. The dance they have been doing for the past 31 years. At the same time I also think MS changed the rules on this. This is not just about Mom and Dad but it’s about our entire family. All of us dealing with this together. And the control and the decisions Mom makes impact all of us in one form or another. I feel it’s time for some big decisions. I feel it’s time to stop circling the issues and to just land, as painful as it may be.

How do you handle decisions with your loved ones? Do you believe there is a fine line to be walked in “taking control?” Do you have any crazy stories from plane flights?

“It’s snowing still,” said Eeyore gloomily. “And freezing.” “However,” he said brightening up a little, “we haven’t had an earthquake lately.”

Optimism is tricky. It’s easy during easy times and hard during the hard times. Dad is someone though who radiates optimism and it shows. For the most part he is always optimistic. He is always uplifting to talk to and he always gives me the sense that no matter what’s wrong or how big the problem it’s going to be okay.

I think I tend to lean towards the pessimistic side. I tend to think why me instead of why not me. Mom getting MS hasn’t helped this very much. I have noticed even more of a tendency to focus on the negatives in life than the positives. The problem though is when I am drawn to the negative I like to stay there for awhile. My mind becomes cloudy. I can’t support others the way I would like and I especially have trouble supporting myself.

For instance Dad is trying to get a heater for our pool so Mom can use it year round. Hoping this will help her to exercise more and strengthen her muscles. After a month he was having trouble getting the city utility company to contact him about completing his request, something that would’ve frustrated me to no end. It would have made me bitter, helpless and I might have just given up. Instead he spoke with Mom’s doctor who put him in touch with the Director of the MS Society who called the city utility company who then had someone higher up personally call Dad to apologize. A lesson learned in optimism but also a lesson learned for people dealing with any disability: Keep fighting. If you aren’t being treated the way you should be call your local chapters. They are there to help you and your family members.

In relation to my Happiness Project, I have made a committment to try to find the positive in every negative. To be more specific though I am going to find 3 things each day to be optimistic about in my life. It’s a small step but I am working towards tricking my mind. Hoping if I do it enough my mind will naturally work towards the optimistic side than the pessimistic side of life. I will begin to deal with problems or situations that arise from a more half full perspective than half empty.

How do you stay optimistic? Any tricks you recommend? Do you find yourself more glass half full or half empty?